Saturday, September 25, 2010

Asperger's Conference

Friday and Saturday I attended the AANE (Asperger's Association of New England) conference in Massachusetts. Strangely enough, the people with Asperger's who attended were not the weirdest people there. There was a gun show in the adjacent convention space, and let me tell you, people who attend gun shows are kind of weird.

Anyway.

Quirky Kids

First up, I went to the first keynote, by Dr. Eileen Costello, who co-wrote Quirky Kids with Dr. Perri Klass. Costello was quite enjoyable to watch/listen to, but I'm not sure I got anything out of her talk that I didn't already know. A few takeaways:* The ability to name 3 people/adults to go to for help is crucial in helping kids through the school years, especially middle school.*Pediatricians are now required to screen for autism spectrum disorders, but parents still complain that pediatricians make light of their concerns. However, that number (data obtained via surveys) has been falling. *Inclusion isn't always the best strategy because many kids with ASDs need direct instruction. They don't learn by following other children as role models.

Sibling Support

I went to a workshop led by Emily Rubin of the new group Massachusetts Sibling Support Network, which I think I will try to join on my daughter's behalf. However, I was kind of dismayed to find that all the people on the panel were dealing with an older kid with ASD/younger NT kid combo. My problem is that my older NT daughter kind of bullies her younger brother with AS. She can also be quite good with him and teaches him a lot, but over the last year or two, the level of not-nice stuff has increased.

I am a Slacker

I skipped the Friday afternoon workshops to go home and deal with home-related stuff. I also skipped the Saturday morning keynote by Dr. Ami Klin, which was apparently a huge mistake as he was reported to be an amazing, excellent speaker. But I was so tired from aforementioned home-related stuff that I really needed to sleep in.

Friendships

The first workshop I attended Saturday was on Friendships, and it ended up being amazing! It started out with the basic Michelle Garcia Winner stuff about social thinking. But what I really appreciated was how they started to look at friendship from the perspective of the kids with AS themselves. They broke it down into preK-2nd, 3rd-5th, and MS and HS and outlined what the kid with AS might feel like when engaged with another child. One of the reasons for a shift in 3rd-5th is that kids in general are becoming less adult-directed and more child-directed, so bullying is more likely to happen.

I'll focus on 3rd-5th, as that's my area of interest, but you can get in touch with the presenters via their website, SuperKids. These kids need a lot of direct instruction to help them think through their responses. If they feel left out because no one else wants to do what they want to do, they can be taught to adapt and go with the plan of others. If they can't handle losing, they have to be told and taught again and again about the social benefits of being a good loser (then other people want to play with you). Kids with AS sometimes think no one is their friend, or they think everyone is their friend.

These are some of the things I wrote in the margins of the handouts:* Use pictures to help students take their big thoughts and put them in the though-shrinker, or put them in the dumpster for a while so they can focus on what they need to focus on.* Focus on telling them how they can feel safer.The #1 predictor of bullying is being alone. When kids are with other kids whom they feel safe with (and are safe with), they are less likely to be bullied.* Don't let your kids win at home just to avoid meltdowns. The more they learn how to lose in a safe place like home, the better they will learn to deal with it in less safe places.* Kids with AS don't always understand what it means to calm down or what a jerk is. * We have to teach them to stay away from people who will get them in trouble. Very often, kids with AS are encouraged to do things that the bully won't do. We can teach them to ask the bully to do it. If the bully won't, then the kid with AS shouldn't.*Sometimes kids with AS go back to the bullies to try to get them in trouble so that justice can happen. However, kids with stronger social skills are adept at hiding bad behaviors, so all the teachers see are the retaliation by the kid with AS. Kids have to realize that sometimes life isn't fair.* Kids with AS need to learn to cope with the bad feelings when someone is not receptive to friendship. Kids with AS are *very* persistent and sometimes think if they just try hard enough, they will *make* that person be their friend. * They have to learn different levels of friendship. They tend to think all acquaintances who are friendly to them are their close friends. * Sometimes they reject friendship possibilities because their ideal friend is someone just like them. If they don't share exactly the same interests, they assume they cannot be friends.

There was so much that was useful and interesting in this presentation. I was so glad I went!

Jason Katims

Jason Katims was the afternoon keynote. He stumbled a bit at the beginning before getting into more of a groove later in his talk. He showed an 8-minute video of Parenthood clips that had me sniffling. Dude, did you have to show every single moment on the show that made me cry? Katims pointed out that he didn't set out to be an advocate for Aspergers; as a tv show writer, he was simply writing what he knew and what from real life he could mine for the show (common characteristic of tv writers, which is why so many tv shows are about tv writers and narcissists ;). As he went through the process of creating the show, he saw that he needed to separate the personal from the professional but at the same time so many moments on the show do find inspiration from his own life. He has deliberately made some changes so that Max and his son are not the same. He has brought experts on Aspergers and autism into the writers' room to share stories and information with the writers. He has to streamline/edit out stories when they don't quite seem appropriate for tv drama, like IEP meetings. I mean, he has a point. :) A fun fact: the girl whom Max asked to play foursquare in one episode was played by Katims' daughter.

The last thing Katims said really struck me. He said that someone once told him that when you enter into the world of Aspergers, you start engaging with a better class of people. (That's not an exact quote, btw--was trying to capture spirit of what he was saying). he has felt so enriched by the interactions with people, other families, therapist, schools, etc., that he never would have been involved with if his son did not have Aspergers. It was such a lovely way to end the talk, because it showed a lot of affection and warmth towards the many people there in the room with him.

Higher Education

The final workshop I went to was about People with AS entering into Higher Education. The presenter made the point that for people with AS, this is a huge transition. They go from HS, where they've had IEPs and supports and accommodations, all mandated by law, to college, where the only law that applies is the one mandating accommodations so as to not discriminate against people with disabilities.

The workshop was mainly geared towards parents of teenagers/college-aged kids, so as a college prof and mother of a 3rd grader, not a lot was immediately useful. However, the presenter also said that preparation is crucial, not just preparing kids to be independent, but also being prepared by finding the right environment and choosing the right college. Parents should keep in mind proximity to areas of interest (i.e., a kid who loves trains maybe shouldn't go to a college with few trains nearby), sensory issues (kids from the South should avoid, perhaps, going to schools in cold areas where they will have to adjust to wearing a bulky overcoat), and availability of services and supports for people with disabilities, including autism spectrum disorders.

This workshop along with a discussion at our lunch table with a mom of a high school dropout (he was having a very negative experience in the school, and once he was old enough to drop out, he did) made me rethink seriously the idea that my son with AS needs to go to college. It may very well be that the kind of 4-year residential experience that was right for me may not be right for him. We are lucky in that we have an Ivy League experience 6 miles away, not to mention that his father works for that same Ivy League institution. He'll also have plenty of pre-college enrichment opportunities there, too. But I am definitely going to take a very open stance to the idea that attending college may not be what he wants or what is best for him.

Re the above mom of a HSer with AS: She mentioned that she wanted for her son to get his GED and go to a CC. One of the people at our table strongly recommended encouraging him to take one college course in an area of interest, so he could get a taste of what a college course is like in an area that's very familiar and interesting to him, before he has to run off and take a freshman composition course.

At the second day's lunch I was talking to people at my table about how I want to take everything I learned and just teach it to other people. Guess it's the college professor in me. But I keep coming back to how lucky I am to have gone, but how underinformed others can be. We had a playdate for the kids in our summer social skills group today, and one of the moms said the school psych at her son's school doesn't think her son has an ASD. (He has a PPD/NOS diagnosis.) But we have a horrible problem with needing more education of clinicians and support staff, even though things are getting much much better.